Analiese Twemlow, Gwynedd Murdoch and Rhys Murdoch
"It feels like the biggest itch in the world." So says 12-year-old Rhys Murdoch of Tourettes Syndrome, a neurological condition that causes people to make uncontrollable physical and verbal tics. In his case the tics keep him awake at night and also attract unwanted interest from members of the public. "I have a swearing tic, I say the f-word. So I'll sometimes be out in public and people will look at me funny and I'll just randomly shout out the f-word."
His eight-year-old sister Gwynedd also has Tourettes and a slightly different take on how it feels, "For me, it feels like something that’s crawling up me, [...] crawling up my body and then I'm doing my tics."
And for their friend, 10-year-old Analiese Twemlow, it's a tingle up her spine that brings on sudden physical movements, including hitting herself in the face.
But it does help to talk about it and to feel accepted within a group.
This Christchurch trio met last year when Analiese was diagnosed with Tourettes after years of eye blinking, jaw clenching and other symptoms. For her mother, Robyn Twemlow, the diagnosis brought mixed feelings: relief to finally have a label for the behaviour but shock that it was a condition neither she nor her husband knew much about. She found very little local information on Tourettes and took to Facebook to find other affected families. "I was just in a state of 'Oh My God, are we the only ones in New Zealand with Tourettes Syndrome.'"
Robyn soon found they weren't and, along with other mothers, formed the Tourettes Association of New Zealand.
Katy Gosset meets Robyn Twemlow and talks tics with some very articulate young people.
I have Tourettes, NOT Tourettes has me
The children say a diagnosis of Tourettes can have quite an impact on their lives. Robyn says Analiese experienced bullying before her condition was well understood. And, even now, this trio has found that, while their own classes and peer groups are supportive, other pupils and, in particular, older students, can make an issue out of Tourettes
Says Analiese: "They just [...] look at me like 'What the hell is wrong with you - you're really strange, you're, like, really weird'."
And Gwynedd Murdoch has had a similar experience, "Sometimes in the playground they would say like, 'Oh, why are you doing that, stop doing that' and [...] 'Oh, you're being all weird and creeping me out.'"
They say stress can bring on the tics, while focussing on a hobby or game can keep them at bay for a while. But they always come back. "When you're out in public, you can hold it in but then when you get home it's just too... and you just let it all out." says Rhys. Brother and sister, Rhys and Gwynedd, say, if one of them starts ticking, it sets the other off. But they agree its nice to have someone else who understands what it's like and they often comfort each other.
It's Part of Who I am
However the Tourettes Association of New Zealand is not just for children. If you sit next to Tania Humphreys on a plane you'll probably get a warning: "I have Tourettes and I hit". She says "If I hit them, I apologise beforehand so they know." She was diagnosed with Tourettes in adulthood and some of her physical tics involve throwing movements, while the verbal ones include exclamations such as "Noodles" or "Honk honk toot."
She says, while she has always had tics, they worsened after the Canterbury earthquakes as a result of stress. But despite the challenges that sometimes accompany the condition, Tania says there are also plenty of funny stories. "My brother-in-law has worn Chocolate Bavarian [cake], because I've ended up ticking and its gone across the room and hit him. He was like 'Cheers - thanks for sharing' and quite happily ate it."
And she tries not to take the condition too seriously. "I think, if you can't laugh at it and enjoy it, it’s going to drive you completely and utterly crazy."
"I used to joke like going through the airport, [...] I'm one of the only people in the world that could walk around and scream 'bomb' and not get arrested." Tania says she's been enjoying meeting other people through the Tourettes Association of New Zealand. And she says, given a choice, she would keep her Tourettes. "As hard as what it is sometimes, it’s part of who I am." She says her grandfather urged her to have an operation to "get fixed". "In the end I turned around and had to say to him "Look I don't want to be fixed. This is me. Deal with it."
Scratching the Itch at Camp Twitch
Robyn Twemlow says the Tourettes Association of New Zealand has now grown from three mums and their children to more than 100 families. It has secured a high profile patron in the form of Dame Susan Devoy and its now working to spread information about the condition to schools, general practitioners and, most importantly, the public. But the most immediate impact for the children will come in the form of next week's Camp Twitch.
Robyn says the camp at Hanmer Springs will bring together children with Tourettes from around New Zealand in an environment where any tics will be well understood and supported. "Camp is going to be a lot of fun, very noisy, but a lot of fun."